Hallo comrades! Thought to pop in & say Hi as I’m scouring the site anyway for info related to the next event in this IBC malarchy (spelling!?).
Have been quietly “getting” on with life for last few months since active treatment ended, just tamoxifen and bisphosphonates for bone secondaries & diclofenac with omeprazole for hip pain. But, disappointingly, it seems that tamoxifen no longer working and the stuff in bones is active and progressing again. Only had tamox for 11 months - wonder if that’s “normal” or because it’s IBC cancer cells? Have no real symptoms from progression so was a bit of a shock but I suppose it explains the increasing tiredness of late?
So anyway, awaiting blood test results to see what’s next (I think they’re talking Femara & possibly Zoladex jabs if I’m proved post-menopausal which is what I’m info-gathering on!) Don’t like the sound of the Zoladex jabs in tummy so hope the chemo HAS pushed me into proper menopause!
Hi there, Ive not seen your name for some time, there was me thinking that you were so well you didnt come on the site anymore, Im sorry I was wrong, this IBC really is a bitch isnt it? Ive just typed a post to Andie T, shes got worries again, Theresa is sorely missed when we have a problem. Your post has confirmed what Ive been thinking this week, that were just treading water waiting for the bad news. How did you get your latest bad news, I mean what prompted them to do whatever they did? Im exactly 2yrs today from DX, 18months from MX, being seen (briefly)every 3 months, I now live in Spain and am flying over for my appts. Last time (Sept)my flight cost a fortune,plus hire car, just to sit and wait 1hr 50mins to see my oncs understudy who hardly laid hands on me, the consultation only lasted 8mins. Ive not had any blood taken since the day after my MX and have been told I wont need a mammogram on the other boob till Nov.2011. When I read the posts by other ladies, they all seem to be being offered scans and tests of some sort, I do feel neglected or should I feel damn fortunate that they think I dont need any tests? What ever they give you, I hope it`s not too horrible,
BTW, do you hear from Dee Dee still? Love from Mags xx
Hi - it was found because I was having such issues with my hip and RT had had no effect so had MRI scan (inconclusive) so then CT scan. That showed progression in existing bone mets and 3 new sites (though hip is not involved!)
Just had blood test results - am PERI menopausal! Great! Neither one way nor the other. Consultant has decided on Femara alone anyway (which is for POST menapausal women when Tamoxifen stops working). In my total ignorance of the subject, I’m a bit nervous about this approach given that the roving cells in my system are of the IBC variety. Might not make any difference but might post a question on the secondarys/hormone treatment thread…
It’s not ALL bad news though - don’t fret about us “treading water” as it were…I’ve had nearly a year of relative “stuff”-freeness (now there’s a useful technological term)and the progresion of secs I’ve had is still contained in bones - no spread to organs.
Regarding tests/scans you feel you may be missing - well - I actually declined “routine” scans until/unless I experienced a problem (which is what happened). I felt it better (for me) to just get on with living rather than be yanked back into the world of “this is what’s going to happen”, appointments, scans with that awful wait for results etc etc. I have been very glad of the space. But each to their own!
Hi again, so its Femara for you is it, thats what they started me off on,well the surgeon did,then 8 months later when I told the onc that Id got aches & pains and awful,nauseating flushes,he put me on Tamoxifen. Your last post has raised another point in my mind, when I was prescribed Femara, although I was 56 at the time,it was only 14 months since my last period yet at no time was I asked anything about periods. I realise with hindsight what a complete ignoramus I was at the outset,my daughter kept trying to point things out to me on the internet but everything about IBC terrified me,at the time I would have given anything to have"normal" BC! After saying that though, the meds have always said it is no harder to treat, just harder to spot. So Ill wish you well on the femara,my sister-in-law in the states sent me an info leaflet about it, it really does sound like it`s the bees knees. Love Mags xx
Stuff-freeness. I love that Haxted. Wish we could have lots more of it. It’s a wee while since we heard from you. Sorry to hear you’ve had new progression. I do hope the Femara stops the little s***s (beasties) in their tracks.
Hi Mags. It’s probably no comfort but I have all the aches and pains, hot flushes and incredible mood swings (crying my way through Children in Need as I type) and I’m not having any hormone treatments. Just the stuffing menopause.
I’m trying to quietly get on with life but I do find all the aches and pains keep driving me to imagine all sorts of horrors. My head knows it’s stupid and probably my hormones creating all sorts of havoc but it drives me mad sometimes.
My onc put me on Femara 18months ago at the end of active treatment.(I am definately through the menopause at 63) Most of the side effects have eased and livable. It was because I kept asking about the increased pain in my back that they finally agreed to a new bone scan. The bone scan has come back clear but because of arthritis they also did a spect scan which I believe is a further type of bone scan which includes a CT(don’t ask I just lay there and they get on with it). That has identified a nodule in my lung which they initially said they wern’t bothered about but a week later called me back for a further CT which I had yesterday. Results are due in clinic next wednesday.
Oh for a period when I have no hospital appointments looming. I thought with the seroma finally sorted I was to be allowed a period of stuff- freeness - Haxted I think you should register that as a new technical term.
So sorry to hear of your progression Haxted but reassured to hear that you have had a year of stuff-freeness. Hopefully the Femara will slow things down again.
Jan I cried my way through Children in need as well. Whats my excuse?
I had quite a wait at the hospital today but when I eventually got called into the consulting room area I was greeted with big smiles on the faces of the BCN and the support staff whom I have got to know. The nodule is totally innocent, benign and nothing to worry about. Daft as a brush I burst into tears of relief and hugged the nurse.
Thank you for all your good wishes it really helps in the dark moments to know other people care.
Hello Andie, have you managed to stop smiling yet? Thats brilliant news, Im so pleased for you after all that crap you went through with your infamous seroma, maybe you can have a good run without any medical interference. Love from Mags xx
Thought you might be interested in my Femara SE aids. Hot flushes I have switched my duvet to a really lightweight one,and take Evening primrose Oil daily. Also to help with both my arthritis and SE’s I take cod liver oil daily. Both these are with the knowledge and approval of my GP and Onc.
Thought to post an “advisory” for other IBC ladies!
Following advice from elsewhere on this forum ref being pescribed Femara alone when blood tests indicated I was not fully post-menopausal, we queried the decision.
Our fear was that we’re talking IBC cells here which are known to be more agressive…Didn’t want any complacency to allow progression in bones to continue at a rate faster than would be permitted with Zoladex added in as another barrier…Result is they took a second opinion, repeated blood tests and have changed their minds: I am to have monthly Zoladex injections alongside Femara.
Don’t want to scare people at all but our medics so rarely see IBC, we might sometimes need to point it out without caring that maybe we’re making a fuss…